Transcript of Public Hearing Richmond
BEFORE THE
INDIANA FAMILY AND SOCIAL SERVICES ADMINISTRATION
FIRST EDITION OF INDIANA'S COMPREHENSIVE PLAN FOR
COMMUNITY INTEGRATION AND SUPPORT
OF PERSONS WITH DISABILITIES
PUBLIC HEARING
TRANSCRIPT OF PROCEEDINGS
ALISON BECKER, HEARING OFFICER
WAYNE COUNTY FAIRGROUNDS
KUHLMAN CENTER
861 NORTH SALISBURY ROAD
RICHMOND, INDIANA
AUGUST 23, 2001
ACCELERATED REPORTING AGENCY
2766 NORTH 600 EAST
FRANKLIN, INDIANA 46131
317/736-6115
TABLE OF CONTENTS
Opening Remarks by Hearing Officer Becker 3
Public Comments:
Kim Lairson
Betty Mark
Marilyn Smith
Kay Lake
Elizabeth Orth
Tony Sheppard
June Reffers
Ed Bell
Dan Stewart
Bev Garnet
Don Jones
Rebecca Justice
Tom Glenn
Bernice Issac
Trena Chupp
Adjournment
PROCEEDINGS
HEARING OFFICER BECKER: My name is Alison Becker and I am the Director of Fiscal Services for the Division of Disability, Aging and Rehabilitative Services for the Family and Social Services Administration. So as you can tell I have a lot of service going on.
I would like to welcome you tonight on behalf of Secretary John Hamilton and Governor Frank O'Bannon to the second round of Olmstead meetings. Tonight we will be discussing the first edition of the State's comprehensive plan for community integration and support of persons with disabilities.
If you didn't already get a chance there are copies on the back table, if you don't already have one. Also there's a sign in sheet, if you haven't already signed in, please do so, that way we can add you to our mailing list and also that we can have attendance of who's here tonight.
Before we start with your part of the meeting, I'd just like to go over a few things. I'd like to talk about where we want to end up, where we are right now, where we want to go next, what I would like from you today.
As you all know this whole thing precipitated from the supreme court ruling Olmstead versus L.C. The supreme court decided that individuals have the right to live in the most integrated environment possible going along with their choice.
As kind of a side, I had the opportunity to travel to Kansas City with Beth and some other folks from Independent Living Centers in Indiana. For a long time we talked about this being the least restrictive. Somebody at that conference brought up the fact that it's not about having as few restrictions as possible but making it as integrated as possible. I think that's a really interesting way to look at it. If we look at it as making sure that people can be as integrated as they can into their community, instead of taking away as many restrictions. It's just a little bit different way of looking at it.
As part of that Governor O'Bannon issued an executive order last year requiring the Family and Social Services Administration to put together a plan to address that supreme court decision.
After a year's worth of gathering information, testimony, talking to people, and coming up with a plan, in June we issued to Governor O'Bannon this plan. Our response to the Olmstead decision will be ongoing. There is certainly no way to do a definitive plan today for how we will be handling these five to ten years from now. So we started out with a plan and we want to move forward from there.
The overall goal then for Indiana is to provide individuals the means to live in the most integrated environment possible. While also allowing for consumer choice. So we need to make sure we have lots of options available on a continuum of care so that people can have a choice to live and succeed where they want to.
So where are we in that goal right now? As I mentioned we have issued the first edition of the plan. It outlines the goals over the next two years that we will have accomplished with the funding that was made available in this biannual budget. We have also submitted three grants to the Centers for Medicare and Medicaid Services, formerly known as the Health Care Finance Administration. Those grants, which are detailed in the Transitions newsletter are, the Real Choices System Change Grant, the Nursing Facility Transition Grant, and the Consumer Directed Care Grant. We look forward to hearing about those by October 1st.
Also as part of that process we are looking forward to creating the community choice commission. We're working on the design and the appointments to that commission right now.
We've also already received two grants from the federal government. The first being a $20,000 grant that was awarded to the Division of Mental Health and Addiction. It will be used to allow for consumer involvement, including identifying and training consumers and family members to participate in the Division of Mental Health and Addictions advisory groups, and Olmstead hearings, related task forces and planning committees. Focus groups for consumers and family members will also be held. This is just one way that we are trying to garner continuing consumer input to our continual drafting of this plan.
The second grant that we received was a $50,000 Starter Grant which will allow us to begin implementing the first edition of the plan, as well as creating the Governor's Community Choice Commission. It is a commission that will be made up of consumers, most definitely, with a very strong consumer task force, providers, and it will also be made up of members of other commissions, including the CHOICE board, the Commission on Aging, various boards that already exist in state government to promote collaboration. It will begin meeting this fall.
So we already have some successful things going on and we look forward to building on that foundation.
So where do we want to go next? We want to create a second edition in order to have it ready for the commission's work. We want to take your comments that we receive at these public hearings throughout the state and do a status report of the first edition. Where are we with the goals we set forward? Where do we want to go next? What do you say we still need to do? That will be used to create the commission's work plan. So the commission will use the second edition to create recommendations on budgeting for the next biennium, overseeing grant implementation.
We have $70,000 in grant funds to implement now but we are hoping to bring in another $4 million in grant funds, and also looking for additional grant opportunities both through private sources as well as anything that CMS may offer to us.
Now what are we looking for today? We are looking for your feedback on this plan. Specifically recommendations for programs for filling gaps in the current system. One of the things that we get a lot of criticism for, and rightfully so, is that we're Indianapolis based and we think of things the way things should be done in Indianapolis and the way things work out well in the Government Center. But as you all know things in Richmond are much different than they are in Indianapolis. So we started these public hearings to go around the state and find out what you think you need in your community in order to have successful implementation of this plan. So that's what we would like to hear about. We'd also like to hear about suggestions of where you think we should go from here.
You'll notice that the plan is very brief in scope. It only goes for the next two years and sets the goals for the next two years. We did that deliberately. We did that first of all because we wanted to put numbers with the goals and objectives, but we only wanted to put what we knew was approved in the budget which goes through June 30, 2003. So the plan is definitely time limited in that. But more importantly we wanted the commission to gather feedback and let 20 the commission decide what the long term goals should be. So we look forward to that group meeting together and coming up with our long range goals.
So tonight I'm going to turn it over to you. You have a lot of work to do because you need to tell us everything that needs to be fixed and how you would fix it.
Also we would be pleased to receive any written comments that you have. Back on the table there are half sheets of paper that list the address for written comments. It has regular mail address, email and a fax number.
So there you have it. Now it's up to you to tell us again what you think is the direction that we need to pursue.
I have just a couple of instructions. I would like for you to come up here, and the reason is because we have a court reporter and she's taking everything down you say so that way we will have a complete transcript. So if you could come up here, and before you give your testimony, say your name and if it's a crazy spelling, spell it, that way we can attribute it to you. Even if you don't see your thoughts in the plan verbatim, definitely the things that you say will have an impact on the next draft. So I want you to know the whole point of doing the next draft is to gather this feedback and to it submit back out around the state. Also for posterity all of the transcripts will be on the website so you can testify tonight and then in a few weeks, show your family members that you are now famous.
So who would like to start?
Come on up.
KIM LAIRSON
My name is Kim Lairson, spelled L-A-I-R-S-O-N. I'm a mental health consumer. I have a manic depressive illness and I have a son who is also afflicted with mental illness.
The last time we visited the community mental health center, Dr. Stiles was trying to serve our needs and then he was trying to take emergency calls and he frustratingly complained to me that they could use another shrink. Those were his exact words. My understanding is, I think Dunn Mental Health Center has three psychiatrists, Dr. Young, Dr. Stiles and Dr. Jones, and I know they have a very heavy case load. It takes a long time, it takes about four to six weeks if you need to get someone started into the mental health process, you have to wait that long before the first initial visit and intake. The managed care that they can provide is a visit once a month, and that's not nearly enough.
I know my counselor that I was seeing at the worst part of my illness was seeing me twice a month there for a while and she was doing the second visit gratis. So I think they should fit it into the schedule.
So I really feel like we need more money for the mental health consumers in the State. I feel like there's a real need, especially in this community. Dunn Mental Health Center is very busy and they're doing all they can to serve as many people as they can, but it's very difficult with the staff and the money that they have.
Thank you.
HEARING OFFICER BECKER: Thank you.
Who else would like to speak?
BETTY MARK
I'm Betty Mark and I'm with the National Alliance for the Mental Illness in the east central district. I am a family member of several that are afflicted with a disorder both here in Richmond and also Kentucky. I can only speak for here in Richmond.
We have quite an organization but the thing that we hear from all of our people is that they can't access a doctor or they can't often get the medications that they need. As you know there is a bill up now that they are thinking about trying to give lesser and cheaper medication in order to save money. This will not be acceptable as most of the time it is very difficult for some of our people to even take a generic.
As I spoke with Dunn Center they said that they keep getting cuts in this area. Many of our people will walk around on the street and you are not able to see a disability. But in a psychiatric break most of the time they will end up with problems with our policemen. Our policemen tell us that they have little or no training whatsoever to deal with this type of problem. So there are many many needs.
Instead of cutting the budget in mental illness we need to be funding the budget. As I understand this Olmstead Act people that are eligible to come out of institutions that can live on the outside, they can do so. But when they are on the outside they have to have access to housing, to medication, to doctors and to all of the support systems that are available out there in order to function.
I hope that when the policy forming committee forms that you will remember mental illness.
Thank you.
HEARING OFFICER BECKER: Who else would like to speak?
Come on up.
MARILYN SMITH
Hello. I'm Marilyn Smith. I'm from Connersville. I'm also speaking for the mentally ill as a parent. I am on the state board for NAMI which is an organization that advocates for the mentally ill. As you should know the mentally ill are often not able to speak for themselves, and as has already been mentioned the mentally ill are not obvious. They could be your neighbor, someone you pass on the street, a sales clerk, they can be the homeless person wondering around living under a bridge, they can be in jail. There are many that are institutionalized now in jail. It's expensive to keep them there. With the proper medication, the proper support for them, they could be living, less expensively for the taxpayer, outside the institution of jail.
Closing hospitals and turning them out, giving them a packet of pills and expecting them to be able to remember to take them? Many of them can, it depends on which disorder they have, how severe it is, and their support system. There are arrangements in other states, other outreach programs that are effective in keeping people out of the institutions and the NAMI advocate for these PACT programs as being the desired one. This is where the consumer has access seven days a week, 24 hours a day to a case manager, a psychiatrist, a case worker. This does not mean that the people are living with them, that they come for every little thing, but they are there when they are needed, before that psychotic break happens or becomes so bad that the person can not request help.
Our daughter is mentally ill. She is not in the public system. It's very expensive to pay for her medication and therapy. She sees and needs to see a therapist two to four times a month. Once a month, she would not be able to hold it together. She cannot hold a job. But with support that we are fortunate enough to be able to provide her, she can live independently away from home.
Mental health needs a much bigger slice of the budget than what it has been getting. I often think that if our mentally ill relatives, friends, significant others, could walk around with big bandages on their head so it would be obvious that they had a disability, that more people would realize how many, many of them are amongst ourselves and deserve our respect and care.
Thank you.
HEARING OFFICER BECKER: Thank you.
Who else would like to speak?
KAY LAKE
This is hard. My name is Kay Lake and my husband is bipolar. We are among the more fortunate because I luckily have good insurance. But the stigma of a person having a mental illness is untouchable in many areas. Unspeakable in many areas and definitely looked down upon right here in Richmond, Indiana.
If you had a heart attack they would put you in intensive care. When you have an illness and you go into the hospital when you're bipolar, you're put into a lock up. If you tell someone you're bipolar they think what's that? Manic depression is another name for it.
When we really -- my husband had it long before, but the real issue came to a head in March of '96 when a local doctor overdosed him with lithium to the point of a heart attack and a coma and me being unrecognizable to him for almost four months. Since then he's had eighteen hospital stays, seven nursing homes, and I have a caregiver with him right now, when I'm away. He's much better now but he had to go through an ECT in order to obtain this, and that's something else.
But even the insurance companies are discriminatory with mental illness. They don't cover this because, like I said, if you have a heart attack you would be covered, you're going into intensive care because your heart is going to stop if you don't. But in mental illness you can go into a hospital and be discriminated against.
When you're on the street, like one said you can put a hat on and say I'm mentally ill, but this is not what the people need. There are a lot of people out there that don't even know, like my husband, he's not even aware of what he's suppose to take, when he's supposed to take it. To be assured he has his medications on time, a decent diet and all these kinds of things, I have to pay a caregiver to take care of him. Given other circumstances, you try to find him a place to go. In a state facility you go through the ropes to try to get into there and that's almost unattainable because the funding isn't there to accommodate.
So there are a lot of things about mental illness that it's not recognized as an illness. It's misconstrued by so many people as not being an illness. It's something that's wrong with you but it's not an illness. And it's definitely an illness. If you were a diabetic and you didn't take insulin when you needed to take it, they would know real quick that you were ill. Though if you don't take your medicine when you're bipolar, they know very quickly that you are ill because you behave very differently.
I just prayerfully wish that there will be funding for the area. I mean we're probably not the only area, but I know our area is very slim. We have an average of 45 at our meetings once a month and 75 percent of this is consumers that come to our meetings. But they're faithful to come because they feel that's the support that they can give. It's a place of touching base and we're proud of every one of them that come.
A lot of them are faithful and that is their thing to do, to be faithful to the cause. Some of them have nothing more to say other than, I signed in and I'm here tonight, but that's okay too because we all know that at some time or another it matters not whether you have a mental illness or you don't, you need somebody standing there saying I'm here for you, and that's what we need.
Thank you.
HEARING OFFICER BECKER: Thank you.
Who else would like to speak?
ELIZABETH ORTH
My name is Elizabeth Orth, and I'm a parent of a young adult who is bipolar. I just want to add my support to what's been said.
My daughter's been dealing with this since she was in second grade and as a young adult now she's had some problems. She is court ordered to have counseling. So when that's over I don't know what's going to happen because she needs that extra push, somebody to contact her. As a bipolar she sometimes feels she doesn't need it, so when she's on her own she may not be able to maintain that contact. So we need a lot of support in this area. As someone said we need to support this with the budget to get better programs and larger programs to take care of all these people that are suffering from mental illness.
Thank you.
HEARING OFFICER BECKER: Thank you.
Who else would like to speak?
TONY SHEPPARD
Tony Sheppard, Executive Director of Area Nine In Home Community Services Agency.
What I would like to speak to is a couple of items, one has to do with, hopefully, the final results of the plan. I will address two issues.
One is the lack of infrastructure that we have due to such inadequate reimbursement through the Medicaid Waiver program. Our providers are now struggling and going out of business due to the lack of adequate reimbursement for the waiver program and until that's addressed, I think the plan is not going to be able to reach the folks and have the impact that it should without providers being adequately reimbursed. That's a major problem here.
There are workers, well, you'll probably have lots of testimony about the workers before the day is over, but they have fantastic workers and they work for a very small amount of money. But there's competition out there and I don't care if the economy drops by 30 percent they'll still be underpaid and it's going to be hard to keep good workers unless we start having adequate reimbursement to the agencies.
The second item is that I want to be sure that at no point do we start having different groups of folks, anybody that has need here in Indiana, their needs need to be addressed whether it's a mental illness, a developmental problem, or physical problems. Since our agency deals mostly with people who have physical problems and some retardation type situations, I think it's going to be extremely important that this plan address all those items and doesn't start pigeonholing things with the state saying, well, we're going to be in control of this and we will let the local people do a little bit of this.
We know what works. We know what's successful. We know what's keeping people out of nursing homes. We know what's allowing people to go from nursing homes back into the community. And the most successful program that we have, and it's always recognized nationally in the top five, is the CHOICE program. And I think why it's so successful is because it has very few bureaucratic strings to it. It's a state ran program so you don't have the federal government putting in all the stuff that they like to add to a program. Plus it has so much local control.
I'll just wrap up my testimony by saying the key to the success of this plan is local, local, local. It has to be locally controlled. The dollars have to be managed locally. The service providers have to be local service providers who have a commitment and a buy in to the community. Otherwise, I'm afraid no matter how wonderful the plan is or how well written, and how great it's going to be, it's not going to be as successful unless it happens through the local levels.
Thank you.
HEARING OFFICER BECKER: Thank you.
Yes, come on up.
JUNE REFFERS
My name is June Reffers, R-E-F-F-E-R-S. I wasn't going to speak today because I read two items in the newspaper but the first one says that disabilities of all kinds were going to be talked about and I'll tell them what I think.
The second one mentioned, Green Acres and seemed to imply that housing was going to be discussed. And so I was talking to someone at city hall and he said just go by there and take some notes and find out what it's about. But I've decided to say something because what the last speaker said needs are not being met and should be.
I have a very strong hearing handicap. I had the measles when I was about six, which destroyed some of the hairs in my cochlear and now I have a cochlear implant, which means now I have all these programs just to give me so much more and I love it. But I didn't get that through social help, but Medicare and my insurance has taken care of most of it.
But one of the problems with having poor hearing is that it isn't like eyeglasses, you can go to a doctor and get glasses that fit you perfectly. You go to a hearing specialist to get a hearing aid and all it does is makes sounds louder. Sometimes those noises can be bothersome, sometimes they're so loud you can't understand. People with poor hearing are bothered by loud noises and most people don't realize that.
What do you do with poor hearing, it's very difficult, I can tell you to go home and to turn your TV on and turn the sound off and that will give you some idea of what it's going to be like, but that doesn't have you communicating. I was rather hoping for the reason that I'm bothering to do this is many of you have been listening to very loud music and some day your hearing is going to start failing and you'll need help. And what I'm hoping is that we can somehow educate the public to understand that hearing, losing your hearing is not like losing your eye sight, it's completely different and it needs to be met with all different kinds of solutions, and for some reason I hope people in your line of work will figure out ways to do that.
For example, I'm hearing most of you really well because I have this new piece of equipment, but if I was in the back of the room I wouldn't hear what was going on in here. But I have been to meetings where they have a big white board and someone sitting there typing and their typing comes up on the white board. I know that costs a lot of money. The first time I saw it, it was at a policy meeting in Indianapolis. But people with poor hearing are not going to stay home and say they can't participate in what's going on in the public, and that's what I want to do.
Thank you.
HEARING OFFICER BECKER: Thank you.
Who's next?
ED BELL
My name's Ed Bell, B-E-L-L. I'm the Director of the Independent Living Center, eastern Indiana, here in Richmond. I appreciate the opportunity to submit my comments. I have a few problems with this draft or the existing plan and rather go item by item, I'll use one to kind of illustrate my point.
In particular, the one I'll talk about today is Policy Direction No. 2, Item 6, and if you'll allow me I'll read it first and then comment on it.
DDARS has contracted with a nationally recognized consultant to assist the state in developing a more responsive waiting list system for all Medicaid Waivers. A system will be developed to determine individuals' needs, to better understand the immediacy of needs of those on the waiting list and provide the opportunity for more appropriate and timely assistance. This system will be managed at the state level, once developed. Responsibility, DDARS. Time line, new system will be in place by June 30, 2002.
This kind of illustrates some of my problems that I would have. Independent living centers, consumer control, consumer driven, local level, reiterating what Mr. Shepherd said. I believe that, locally, we have the answers. We don't need to be controlled on a state level. I'm not real comfortable with people in suits and ties in Indianapolis telling me what my choices are and what slots I should fit in.
DDARS has already contracted with consultants to assist people with disabilities, and that is me, on the local level. With our consumers, my staff, and that, we work for a local board of directors of people with disabilities and that is to help individuals help themselves with disabilities, to be able to live in the community in an inclusive setting. I'm very frustrated that even in this wordage, this one line alone, that they will develop a more responsive waiting list. You know it's appalling that we would have a waiting list to be able to get home and community based supports. There's no waiting list for a nursing home. I work with consumers day in and day out and our biggest job is to be able to get them community based supports. If you get them on a waiting list, it takes three years for them to be able to get services on a CHOICE or Waiver waiting list, and somebody usually has to die for to open up for them to get services there. Yet, we can put them in a nursing home like that.
They say we can't afford community home based supports where there's no problem affording nursing home care or institutionalized care. I find that appalling and I have an ally, and it's the Supreme Court of the United States. They said that if the federal dollars are with that individual they have the right to live in an inclusive setting of their choice if it's medically feasible. And that's what this plan is supposed to develop and I don't see that in this wordage here. It says a more responsive waiting list for Medicaid Waivers. That's not inclusion in a community based setting and it's also not individual choice when it says the system will be managed by the state at the state level.
Local people can make up their own minds and make their own choices. We already have contracts, contracts with Area Aging. We have a good working relationship with Area Aging. The Independent Living Center is also working with consumers for community based supports. I agree also with Mr. Shepherd as far as the compensation level for providers, but I would also add that in a timely manner.
Presently it's redundant to make a contract with a nationally known consultant when we already have a contract with organizations like us. It's like if you throw more money at it, it will solve the problem, more money at it, it will solve the problem. Actually the money needs to follow the individual and let the individuals, once they have the proper information and know what their choices are, those individuals can solve their own problems. We don't need somebody in a suit and tie, in an office some place in Indianapolis or Washington, D.C.
We already have contracts right now with local organizations like Area Aging, like Independent Living Center that can already provide those services but they do need to be compensated. The local providers that we work with need to be compensated on a fair and equitable basis. But we also need to do that on timely basis. As I said at the last hearing, that also means that we are reimbursed in a professional, proper and timely way. We submit our receipts for what we do through our endorsed grant and then we're endorsed through a voucher process.
Currently I have $15,000 out in a voucher right now and I have less than a $1,000 in the bank. Four times I've had to hold paychecks for my staff until we were out of vouchers. I'm excited that you're here now, Alison, and that you're new and a fiscal person because hopefully that will change. I'm always looking forward to positive, progressive change and maybe we'll have that with you in this financial position.
But I would hope that this plan, the next draft would value the local level already contract interests of Area Aging, for Independent Living Centers and that we could be treated in a professional manner, reimbursed in a timely and equitable way, and there would be more consumer control. More, not necessarily additional choice, but be able to have control over the dollars of those choices on the local level.
Thank you.
HEARING OFFICER BECKER: Thank you.
Who else would like to speak?
DAN STEWART
Hi. I'm Dan Stewart. I'm the Executive Director of Green Acres. I'll just make my points very brief.
I think that the Olmstead decision is one of the greatest opportunities that's ever happened in this country for people with disabilities. It's really going to make our state accountable.
A couple of points that I want to make in here that I think reinforces a couple of comments that some of you had made. Many of our people are eligible for the Medicaid Waiver and I know Indiana has been working on a new waiver and it's really important that things such as personal assistance, transportation, and nursing care be a part of that process.
We serve over 450 people with disabilities every month at Green Acres. Of the adult population that we serve, there's almost a hundred of them who we provide those type of services without any reimbursement. They have a wonderful place to come, they're involved in training programs, learning basic skills, transitioning into the community, and we need to be paid for that.
It's sad when I stand up here and say that the wages of my staff are $7.00 to $7.50 an hour. These people are truly committed to serving people with disabilities. You know they sit there and they wipe their butts, they take care of them, they transport them to meetings, they're involved in everything that that person needs, and they really care.
The Medicaid system or the Waiver system, the rates have got to come up so that we can adequately pay these people and keep them. Turnover is a big problem for all of our agencies. When you go down the street and go to work at Meijer's and get a $1.50 an hour raise and sit there and maybe just stock shelves versus taking care of people like we do, you know, it's really sad.
I think that the points in this plan are excellent. One of the other things that I want to stress is one of the points in here is talking about training for programs like Tony's for the triple A's. With all these new policy directions the community based organizations also need extensive training to help us implement the specific objectives that are part of this plan. We need that from the state, it's extremely important.
We've gone from practically no regulations now to a bible and it's really difficult for us to move in a period, really from a six month period of time to say, gee, you did have rules and then you made up your own and now these are the new rules and you have to do these as of July 1.
It's very important that the state moves in that direction. I know that they are doing some things, that's positive, but there are many more things that are part of this process.
I think the other thing that is really important about the Olmstead decision is giving people with disabilities more choices. People who live in nursing homes and people who live in institutions should have the choice to transition into the community. To me that's probably the most important thing that the supreme court decision did, to really give people those kinds of choices and to force our states to move in that direction and put together a plan.
I think that's all. Thank you.
HEARING OFFICER BECKER: Thank you.
Who else would like to speak?
BEV GARNET
I, too, did not expect to say anything. Hi. I'm Bev Garnet, and I'm Executive Director of Richmond's Adult Day Care Center. We've been in operation for 13 years and as some of you may be aware the state as part of their major initiative or first major initiative has included a change in what they're calling adult day care services. We are going to see an expansion of the utilization of adult day services which, of course, I am in favor of.
Personally, I'm a registered nurse. I'm also a 52-year-old caregiver for an 83 year old who has early age Alzheimer's, and a brother who has AIDS. And I can tell you from a very personal standpoint that neither of these individuals are looking to spend the remainder of their lives in institutionalized care, whether that's the best assisted living that I can find for them in Pennsylvania or in nursing homes. On the east coast there are more options than we have here locally, that's for sure.
My mother has been attending an adult day care center for years, and she attends seven days a week, and the day care center receives reimbursement for her attendance there. As many others have mentioned including Tony and Mr. Stewart, we would certainly hope that the state would consider expansions of CHOICE. I think that program from it's inception has been extremely helpful for many of the families that we have served in the last 13 years.
Likewise, Medicaid Waiver slots need to be expanded so that we can offer more choices and more options for individuals. We serve a rather wide variety of folks, our youngest is 19 with cerebral palsy and our oldest is 98 and has a better memory than I do. We have quite a few folks with dementia and that hasn't really been mentioned but anyone who lives with an individual, a spouse, parent or grandparent, knows that dementia is a very very disabling condition.
The flip side of that is for those caregivers in the community, who are really the unsung heroes of a lot of what I see on a day-to-day basis. These folks receive no reimbursement. Most of them are family members, many the oldest daughter, or daughter-in-law in the family. They are providing millions of dollars of care, direct care, every year, every day and for the most part they don't complain. All they want is an opportunity to have their loved one remain at home in a loving environment, or perhaps in a secure environment, while they're working, because many of us today have two members working trying to keep above water. So I would ask that we consider this other area of disability, and that is those with memory problems, those with problems more of a cognizant nature than just physical disability.
Thank you.
HEARING OFFICER BECKER: Thank you.
Would anyone else like to speak?
DON JONES
My name is Don Jones. I've been in a chair since 1983. I'm here on very short notice and very unprepared.
I've been dealing with this since '83 and I had to spend eight and a half years in a nursing home. I've been out since 1992, and that was thanks to the home health agencies. At that time the home health agencies were able to pay $2.00 more an hour than nursing homes and gave benefits.
With all of the cut backs that have been made, the one gentleman was talking about the reimbursement and cut backs, they are now paid the same or less, with no benefits. Because of that my support system over the past few years has deteriorated because it had been my father who now has cancer and my mom has to take care of him. I have a small family. My girlfriend of eight years, we're no longer together because of the strain that it put on us. She was wanting to be my girlfriend not a nurse.
I'm very thankful for everybody that's trying to help me out there and the help that I have gotten, but it seems like there's a lack of coordination between agencies. Again, finding out what's available is very hard some times. And getting what they say I can have seems to be impossible sometimes.
Right now I'm virtually living from day to day wondering if I'm going to be back in a nursing home by the end of the week. I feel like if the money that was sent to these agencies if I had access and control of that, I would be able to pay my helpers more, that's one of the new programs that my Area Nine caseworker made me aware of just this month. But I don't know if I'm eligible for that same privilege. And if I'm not then I'm still dependent upon the home health agencies.
I just feel like if I had more control of that myself then I'd be able to get more help. Because like everybody has been saying the home health caregivers are the ones that do all the work I'm dependent upon, and you can go to McDonald's and get paid more than what they're getting paid.
This may be about a lot of my personal problems but I even believe the people in the nursing homes which we're trying to stay out of, if we keep cutting back on the care that they give in the nursing homes to the hours that the state requires them to have is so minimal, the conditions are almost appalling in my opinion. I had to spend two and a half weeks in a nursing home this year because the home health agency couldn't cover me. And those people are the ones that made this country, that fought the World Wars, they're the ones we should be looking up to and taking care of.
That's all I have to say. Thank you.
HEARING OFFICER BECKER: Thank you.
Who else would like to speak?
REBECCA JUSTICE
Good afternoon. My name is Rebecca Justice. I'm the coordinator for Step Ahead Council here in Wayne County.
I wanted to share with the group today some of the results that the council obtained last year when they completed a community assessment of needs in our community, several things that were identified specific to the disabled communities. There are gaps in service in our community, and hopefully they'll be helpful to you to speak to Wayne County.
One of the first and most important I think, and we've heard from several individuals today, is that the cost of services and assisted devices is extraordinary. A lot of people in our community do a wonderful job of providing the resources and the referrals, but the individuals that need the services and equipment still cannot afford those items. That needs to be fixed.
Secondly, the issue of housing is very significant. There isn't available housing, there isn't affordable housing for those individuals who are able to live on their own. There aren't enough independent living circumstances and there aren't enough transitional living opportunities in Wayne County.
Also significant in terms of care is that we don't have a public transportation system outside of the city limits. For individuals who have the misfortune of living in the county they have no opportunity to obtain services, most are focused in the Richmond area.
The services which we were told by individuals that are disabled here in our community is that they wish that they would have access to include better information and referral services. The problem of knowing that you're eligible for something but not knowing who to get it from or where to get it is as an important stumbling block as having the funds. We need to conquer both of those issues. People want to be trained to be self advocates. They want peer counseling. They also need help first and foremost again with assisted devices so that they can be a valuable part of our community.
We did also in our assessment identify several assets in this community and it is important to remember that Wayne County does have several assets that serve our disabled community. Several of those agencies you've heard from today. Those that were identified for us included: Green Acres, Dunn Mental Health Center, The Community Council on Disability Awareness, The Independent Living Center, Area Nine, and the Adult Day Care Center.
I also wanted to share with you that before leaving the practice of law, one of the things that I did by choice for five years was represent patients in mental health commitment hearings. And frequently it was a frustration not just for myself but for the patients and the doctors to try and be creative and individualized for that patient. Our choices seem to be on the street or in the state hospital facility. There was very little in between. Patients were left on what should have been a temporary ward of the hospital longer than they should have been. They were left in a state hospital longer than they should have been, because there was always a wait for that transitional living or that independent living situation. I've had personal experience with that as a professional and it's very frustrating when you have individuals in the community who can and will contribute if you'll just simply open the doors for them.
Thank you.
HEARING OFFICER BECKER: Thank you.
Who's next?
TOM GLENN
My name is Tom Glenn. I'm an employee of the Independent Living Center here in Richmond. Actually it was interesting to me at the beginning you had used the phrase "fill in the gaps" and that there were some grants and some new commissions being formed. I might like to suggest that since I've been working in this capacity with the Independent Living Center and these observations are just with my own personal eyes, not corporate policy it seems to me perhaps we need less not more.
One of the major hurdles we have to overcome with each person we work with is not just their disability but the complete confusion, no understanding of interaction between agencies, and overlapping, and just a complete inability to understand what services are available.
Serendipitously, this morning I had attended a program at the social security office. A program presented by a gentleman who is creating a new grant-funded service that benefits counseling. And a comment made by a person at social security was we do things, we encourage people here to accomplish things to remove themselves from disability but we have no idea what impact this has on housing, Medicaid, food stamps, we just don't understand, are we hurting or helping? Sometimes we don't know.
It seems to me that if there is an entire employment system growing up around explaining the system in Indiana, then perhaps the system needs to be streamlined and simplified rather than more commissions and more studies. In the course of beginning this work with the Independent Living Center I did most of the first two months simply studying and I found in a book here put out by Indiana's early intervention system for infants, toddlers and their families more than 57 programs, agencies, and bureaus identified just for the services given to children. And some of them I can't understand how anyone would find their way through them.
For instance, if you'd bear with me through this for 31 of them. The Governor's Interagency Coordinating Council on Infants and Toddlers, The Bureau of Child Development, First Steps, Step Ahead, Simple Steps, Division of Child Development, Healthy Families, The Bureau of Family Preservation, Children's Special Health Care Services, Division of Family and Children, Administration for Children and Families, Maternal and Child Health Services, Maternal and Child Health Bureau, Children's Special Health Care Services, Newborn Hearing, Screening and Introduction Advisory Board, Indiana Perinatal Network, Indiana Center on Early Childhood Development, Office of Community Planning, Healthy Child Care in Indiana, Indiana Parent Information Network, Hoosier Healthwise, Friendly Access, Baby First, and it goes on.
Pages of agencies that already exist and we seem to not be able to find our way through them all to get to the right place. As I say if there's an entire employment growing up on grants whose only purpose is to help people find their way through this, that would seem to indicate that the problem, one of the problems, may well be the simple complexity of the system that is out there and it's fragmentation.
Well, as an example of the confusing rules, we recently dealt with a homeless family, though this is not a state agency, but in trying to find them a home, we went to a trustee, township trustee, who said, well, we can't help them they're not Wayne County residents, to which I said, well, of course they aren't. They're homeless. Well, now that regulation may make perfect sense to the bureau and the bureaucrat in interpreting it, but in common sense application it makes no sense and it seems to me that is kind of an attitude that perhaps from the state level down we can try to eliminate and streamline.
Coming from a military career prior to this where the attitude was whatever it takes to accomplish the mission, I find a lot of personal frustration in encountering an attitude of well, no, we can't do that. That I think needs to change.
HEARING OFFICER BECKER: Thank you.
Who's next?
BERNICE ISAAC
Hi. I'm Bernice Isaac, and I'm here in kind of two capacities. I work for Birth to Five, early childhood development program here in Wayne County and I also am president of NAMI. I see some of my colleagues are here and I apologize I came in late so I'm not sure what all of you guys said.
One of the things I see in the Birth to Five and one of the things that I see when I'm doing assessments and visiting families in Wayne County is the lack of affordable housing and just poor living conditions. It just blows my mind when I go into some of these apartments and homes and I see what kind of conditions some people are living in and the amount of money that they are paying for these homes and apartments that are just -- like I said blow my mind. To me they're not even fit to live in, but I see that a lot.
And, of course, as far as the mentally ill, one of the biggest problems that we have with mentally ill anywhere is that they become homeless a lot of times. If they do find housing it's usually not appropriate, it's very expensive. So that is one of the main problems that we see with our mentally ill people is that housing is a big, big issue with them, and being able to afford that housing that they need. And it's a big problem here in Fort Wayne County.
I think that everything else I needed to say has probably already been said. Thank you.
HEARING OFFICER BECKER: Thank you.
Who else would like to speak? Anyone?
TRENA CHUPP
I'm Trena Chupp. I also work at the Independent Living Center. I have something to say because I am a person with a disability and I also work with people with disabilities. Just recently I moved here to Richmond from Muncie and I kind of have the same frustrations here as in Muncie. One of the things that is frustrating is the housing. I was calling about apartments, even now when I do that I get all these answers of well all the accessible ones have a waiting list. All these have a waiting list. Well where are we supposed to live until these waiting lists -- until we get to the top of these waiting lists. That is one of the things that I think needs to be changed. People need to be able to change their housing so that it is accessible.
Another frustration is the transportation issue. There aren't very many options for transportation. I work during the day from 9:00 to 5:00 and in the evening I don't have an option for transportation. And I don't have a way of paying for that transportation because it's not important enough, it's not for medical reasons, it's not for my work, it's just for my own personal use.
I think that as a person with a disability I would like to have choices with the transportation and to be able to make my own decisions with my life and be able to have adequate transportation, and I want this for my consumers too. There's a lot of need for transportation and housing and also dependent care and that's another need that needs to be addressed.
People need to be able to have choices and to be able to have choices to be able to pay their own attendant care or whatever type of care they get.
Thank you.
HEARING OFFICER BECKER: Thank you.
Who else would like to speak? Anyone else? No one else would like to speak?
(No response.)
Well, on behalf of Secretary John Hamilton and Governor Frank O'Bannon I would like to thank you for your participation today. We think it's clear that people with mental illness need special consideration. It's also clear that the elderly need to be brought into this plan a little more. It needs to be clear that this is a plan for people that need support from the community whether they consider themselves disabled or not. It's just not about a definition of but what you need to be in order to be successful. You've communicated that to us tonight and we just need to make sure we communicate that better in our next edition and subsequent editions of the plan.
Again, I encourage you to continue to provide input. The address for public comments is back on the table. Please take that with you and share it with any of your friends who maybe couldn't be here tonight but would like to provide input. Continue to keep us informed of things that you think of that we should include in the plan or things that we need to consider looking at when we begin to address the plan again.
Please don't hesitate to stick around and talk to me. There are a couple of other people here from FSSA and we really appreciate you taking the time to come.
Thank you.
(Hearing ended at 4:15 p.m., August 23, 2001.)
STATE OF INDIANA )
) SS:
COUNTY OF JOHNSON )
I, Linda R. Merkl, a Shorthand Reporter and Notary Public, in and for the County of Johnson, State of Indiana, do hereby certify that the foregoing hearing was taken on behalf of the Indiana Family and Social Services Administration in the matter of the Olmstead Act, beginning at 2:00 p.m. on the 23rd day of August, 2001;
That said hearing was taken down in stenograph notes by Andrea Jacobs and afterwards reduced to typewriting under my direction; and that the typewritten transcript is a true record, to the best of my knowledge and belief;
IN WITNESS WHEREOF, I have hereunto set my hand and affixed by notarial seal this 21st day of September, 2001.
Linda R. Merkl
Notary Public
Residing in Johnson County
My Commission Expires: January 27, 2009
